Lifeline for hunter syndrome patients: continued access to Brain-Targeting therapy
NCT ID NCT05795361
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This program offers continued treatment with idursulfase-IT (TAK-609), given directly into the spinal fluid, plus standard intravenous Elaprase, for children and adults with Hunter syndrome who have cognitive impairment. It is only open to people who completed earlier studies of this combination. The goal is to maintain any benefits they experienced and keep the disease under control.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
Active substance
idursulfase-IT (TAK-609) given into the spinal fluid, plus intravenous Elaprase
What this could lead to
If successful, this program could provide ongoing disease control and cognitive benefit for people with Hunter syndrome who have cognitive impairment.
What could go wrong
This is an open-access program, not a new trial, so it does not test whether the treatment works. Risks include side effects from the spinal injections or the implanted delivery device.
Disclaimer
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This is a summary of
the original study
.
Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Ann and Robert H Lurie Childrens Hospital of Chicago
AVAILABLEChicago, Illinois, 60611, United States
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Board of Regents of the University of Nebraska
AVAILABLEOmaha, Nebraska, 68198-5450, United States
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Division of Medical Genetics, University of Utah
AVAILABLESalt Lake City, Utah, 84112, United States
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H.C.U. de Valladolid
AVAILABLEValladolid, 47003, Mexico
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Hospital Universitario Reina Sofia
AVAILABLECórdoba, 14004, Spain
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Instituto Nacional de Pediatria
AVAILABLECoyoacán, Mexico City, 4530, Mexico
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Jackson Memorial Hospital University of Miami
AVAILABLEMiami, Florida, 33101, United States
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Joseph M. Sanzari Children's Hospital
AVAILABLEHackensack, New Jersey, 07601, United States
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NYU Langone Medical Center
AVAILABLENew York, New York, 10017, United States
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Phoenix Childrens Hospital
AVAILABLEPhoenix, Arizona, 85015, United States
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Queensland Childrens Hospital
AVAILABLESouth Brisbane, Queensland, QLD 4101, Australia
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Randall Children's Hospital at Legacy Emanuel
AVAILABLEPortland, Oregon, 97227, United States
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Royal Manchester Children's Hospital - PPDS
AVAILABLEManchester, M13 9WL, United Kingdom
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Seattle Children's Hospital - PIN
AVAILABLESeattle, Washington, 98105, United States
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The Children's Hospital of Philadelphia
AVAILABLEPhiladelphia, Pennsylvania, 19104, United States
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The Cleveland Clinic Foundation
AVAILABLECleveland, Ohio, 44195, United States
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The Nemours Foundation
AVAILABLEWilmington, Delaware, 19803, United States
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The Regents of the University of California
AVAILABLEOakland, California, 94609, United States
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The University of North Carolina
AVAILABLEChapel Hill, North Carolina, 27514, United States
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UPMC Childrens Hospital of Pittsburgh
AVAILABLEPittsburgh, Pennsylvania, 15224, United States
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Vanderbilt Children's Hospital
AVAILABLENashville, Tennessee, 37232-7610, United States
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Washington University
AVAILABLEWashington, Missouri, 63130, United States
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